Earlier today I read that today is National Doctors Day. That means A LOT to me. My doctors, throughout the years, have done everything they possibly could to help me fight my disease, Cystic Fibrosis. They have also done a lot to further CF research and nothing means more to me than finding a cure for CF someday. For all my friends with CF out there, and all the families who have a loved one or know someone who has CF. Our doctors are working hard to make sure that happens.
I have been blessed, from practically birth, by having the greatest doctors I could have ever imagined. I mean it's obvious I did not imagine having Cystic Fibrosis, but having such amazing doctors who can make everything about a life threatening disease a little bit easier makes a huge difference in the lives of the individuals fighting the disease. Like me. That's what happens, a doctor is so encouraging, and working so hard on your behalf to make sure you live as long as possible, as long as you follow your prescribed regimen, what more could you ask for as a patient?
My doctors were always like my family, I always told them about all my adventures, I always took their advice and asked questions for improving my healthcare, and most of all I always trusted them. The day I moved to the adult center I lost all of those doctors, the ones I knew my whole life, the ones who kept me around longer than they had ever expected and what statistics show. I was going into completely new hands in the worse health I had ever known.
Now I have some new doctors. They saved my life, you know, life savin' somethin' somthin' no big deal, hahaha, but really, they trusted in me and gave me new lungs. They trusted me to care for them, and they have been there every step of the way. I have the most wonderful, amazing and inspiring surgeon and transplant team, who are probably the greatest at what they do of anyone on the face of this earth, which they are no doubt, and I know they are looking out for me. How much more could I ask for? I know that all they want is to keep me healthy and living it up! There is nothing better than knowing you can trust your doctors to take care of you the best they can, and give you the best advice no matter the situation. There are no words to express my gratitude for my doctors over the years, but I hope that they all know how much I appreciate them and how grateful I am to have them in my life.
So THANK YOU DOCTORS (especially mine, past and present) for helping the world live it up, despite the illness and disease thats among us.
I am not sure exactly how to go about thanking someone for saving your life.... but... maybe I will figure it out someday.
HAPPY CINCO DE MAYO!!!
I finally put together my video of me snowboarding after my lung transplant. I had gone for a few runs but otherwise had not been on the slopes for almost 2 years. Prior to that I was doing a few runs here and there with my oxygen tank in my backpack, but after a while it was even too hard to board with the oxygen. I am SO THANKFUL for my donor, their family, and amazing team of doctors for bringing me this far and giving me all of my abilities back, especially snowboarding.
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” – Albert Einstein
Hope you like it! (Still learning the new camera and its semi-crazy exposure, and not the most comfortable on the slopes yet but hey, I'm not complaining, I'm just happy to be out there!!) Sorry for all the driving but it was cool to see that much snow in April.
After the Honeywagon run (4 miles) I saw another race nearby called Runnin' O' the Green. It looked like it might be more fun for me since it was shorter (only 2 miles). I was super nervous for this one because I really wanted to make it the whole way without walking and in 25 minutes or under.
Well I got a couple of my friends to meet me there, who are awesome, my dad also came, yay! It was monsoon raining while my dad and I registered, but we were stoked at the race shirts.
I picked different clothes from the car as it got closer to race time since the raining has not stopped (just calmed down a bit) and we waited for the race to start.
I started off slow again and about half way I realized it's A LOT harder to run on trail than road (and treadmill). So my legs were not doing as well this day. I stopped and walked for a few minutes and just like the last race tried to speed up once close to the finish line. 26 minutes, not too bad.
Once again my momma was at the finish line to greet me, and I was surprised how not tired I was. I didn't even require a nap that day! Next race goal: no waking for real!!! Oh ya! AND I GOT NEW SHOES!!
Since I have been training (run/walking) with the Couch to 5K Plan, some friends of ours and my mom were going to run a race near our house. So they thought I should do it as well. I agreed of course.
I admit I was a bit nervous as I had not even gotten halfway through (just starting week 5) of the running plan, and the distance was further than I even planned on training for (4 miles instead of 3.2) Well I went for it, I was less nervous knowing I probably wouldn't make it the whole way without having to walk so I just started off slow and tired to save some energy for the finish line. It seems like it was just before or just after mile 3 that I had to start walking due to my ankle bothering me. But I may have made it almost 3 miles running.
Iwalked for a few minutes and continued running, soon you could see the building which was home to the FINISH LINE!!! I tried to run my fastest but with 100yards to go I thought I might die. I was DONE running, and I just kept going.
I had the idea before I started that it was going to take me 2 hours (lol that was just to make myself feel better) but literally I was guessing 1:20 or 80min. Because first of all I had never ran outside before, and secondly I had been running an 18:45 minute mile on the treadmill.
Well I reached the finish like at 52:26!! That's a 13min mile for 4 miles!! Needless to say I was proud of myself and even MORE thankful for my new lungs, because that right there had been what I had always dreamed of doing while I was laying on the couch being pumped with oxygen dreading the walk to the bathroom which is my house isn't very far away.
Thanks momma & Gina for being cool and thanks Dean & Spener for sticking with me! (Thanks Polly for the pics!)
For those of you who know about the transplant medications. Or fellow transplant friends, they take blood levels of a lot of the medications quite often.
Lately I have been having trouble with my Tacrolimus (Prograf) level. The level was super high and it was taking a really long time to get to the right dose. Well for now, I'm on 1.5mg and levels seem to be good.
Also I have been keeping my weight on and eating well. My lung functions are hanging at 64% (after the recent crash to 48%) So I am extremely happy with that!
The other awesome thing, is that my oxygen sticks at 99-100% even at 4,500ft altitude. AMAZING!!! Lastly, my heart rate is around 85 at rest. Where is use to be 120-125.
I just feel so lucky for this second chance and the ability to do and be everything that I have been given the chance to do right now. And the people I have to thank the most are my doctors, surgeons, the donor most of all of course, and my family and friends for sticking with me through all this!
Just a small update after the long blogging break but I will try to keep you all posted more often in the future!
Since it's the holidays and all I thought I would write to my organ donor because that is what I am thankful for this season! Please consider registering to be an organ donor if you are not already. :)
I am very sad that you have passed. I really hope and pray you had an amazing life while here on earth. I like to know that you are now in a better place. My thoughts are with your friends and family during these tough times, as these are the ones who are hurting the most. These times of pain for them will probably be with them forever. No one should have to lose a loved one, especially one so caring and loving enough to share their organs in the event of such tragedy.
The decision you made to donate your organs has changed many, many lives. As I have been fortunate enough to see first hand. People, myself included, are in disbelief of the positive effects and extraordinary outcome of organ transplantation today. Not nearly 2 months ago I was breathing oxygen with barely 17% lung capacity and now I am really able to live with over 75%, which it has almost never been before, and absolutely no oxygen. My life has changed and my life has been saved.
If it had not been for the decision you made to become and organ donor, I might still be sitting on the couch coughing and struggling to breathe, just trying to get through all of my therapies, and most of all get through the day. If it had not been for you I would not be able to walk, bike, and exercise daily as I am now able. If it had not been for you I might have never gotten the chance to live the life that most people take for granted, life with the ability to breathe. If it had not been for you I might never have seen my lung functions improve above 17%. If it had not been for you, I might not even be wring this today.
Donor, you made a decision that a lot of people don't or wont ever make. The selfless decision to save lives even after you're gone. The decision to change the lives of the many waiting for organs, their families, friends, an almost everyone they encounter. Bringing some hope to even the ones that may need organs in the future. Thank you for you decision. It changed my life beyond belief.
Even though thank you could never put my thoughts into words. Thank you organ donor. I would not be living this life without you.
First of all, its thanksgiving. What more is there to say than.. FOOD!!! Okay okay, I guess I could talk about being thankful
I am very thankful for a lot of things, health, friends, family, especially these new lungs of mine and of course my donor and their family. I am always having a good time and I'm thankful for that. So, yeah FOOD, but what are you thankful for?
I just had to post this link, its a totally dorky and awesome turkey game, don't get hit by a fork!